Better Guidelines Needed on Endometriosis, Patients Say

Protesters bring their fight to ACOG headquarters

WASHINGTON -- The American College of Obstetricians and Gynecologists (ACOG) isn't doing enough to promote early diagnosis and proper treatment of endometriosis, according to a group of endometriosis patients who brought their fight to ACOG headquarters here.

"For a long time, endometriosis patients, advocates, and experts ... have been going to ACOG and telling them that there a big problem in the way ob/gyns approach endometriosis," Casey Berna, a co-organizer of the demonstration, said in a phone interview. "As a social worker, and from what I discovered as a patient myself, what I experienced is that not a whole lot has changed in the approach to endometriosis, and it's causing a whole lot of suffering for patients."

One of the group's main complaints is that ACOG needs to update its endometriosis treatment guidelines to include earlier diagnosis and "truly effective multidisciplinary treatment," said Heather Guidone, another co-organizer. "That leads to all else: tighter guidelines, patients diagnosed much earlier, and patients having treatment much earlier in the disease process, so they're not having 5, 10, or 15 surgeries and taking useless hormone therapies."

Guideline Update Ongoing

ACOG's guidelines on endometriosis were last updated in 2010 and then reaffirmed in 2016, and are currently being reviewed. The protest organizers, who stood outside ACOG's headquarters during the day on Thursday and Friday to draw attention to their mission, said they have been working with ACOG to try to solve some of these problems.

"We [sent] petitions to ACOG for updated standards of care, signed by more than 8,000 people," including providers, Berna said. She also spoke with Hal Lawrence III, MD, ACOG's executive vice president and CEO, for about an hour. "He said they were interested in multidisciplinary care, and asked for research to support our ideas, thoughts, and changes. We worked on getting the [appropriate] research [documents] and wrote a revision of the [ACOG practice bulletin on endometriosis] from a multidisciplinary care perspective, and handed all that in."

Lawrence confirmed in a phone call that he had met with Berna and received the information. "I enjoyed talking to Casey and thought we had a good discussion," he said, adding that he gave the information to the committee that is currently reviewing the practice bulletin. (The activists, who all identified themselves as endometriosis patients, said they chose this week to protest because of the ongoing review.)

Completing the review will take several months; after the committee has made its edits, the revisions will go to a clinical document review panel to check for accuracy and consistency, and then to the executive board for approval. "So by the time a document is finally approved by ACOG, over 85 physicians have reviewed it and approved it," said Lawrence. "It's a very thorough evaluation and approval process.

"We're trying to be responsive," he added. "We're all physicians, and we're all there because we want to help patients. We feel awful when patients aren't getting better ... Our goal at ACOG is to provide our members with the best science to know how to evaluate, treat, and refer when necessary."

Lack of Specialists

One problem the protesters pointed to was the lack of ob/gyns who specialize in treating endometriosis. "Of the 50,000 ob/gyns that ACOG represents, about 125-150 are true endometriosis specialists; their interests are not represented," said Guidone. " That speaks to the larger problem that ACOG is supposedly responsible for the training of the best healthcare providers in the world; they're not training on endometriosis. It gets a 15-20-minute mention in medical school and that's end of it."

Lawrence disagreed. "I ran a residency program for 15 years, and I served on the committee that reviews residency programs," he said. "I can tell you that endometriosis is a very significant gynecologic condition that all residents are trained in and about, so they know the symptoms, how to diagnose it, and how to treat it."

The activists, however, say that hasn't been the experience of many patients. "We've heard that often, the people who raise their voices are usually a few patients with bad outcomes, but that couldn't be farther from the case," said protest co-organizer Shannon Cohn, a lawyer and filmmaker who has produced a documentary on the issue. "I had a good outcome and that's because my specialist didn't follow the ACOG guidelines. I've talked to women who went 7-10 years before being diagnosed, and then had treatments with awful side effects and [were pushed] toward hysterectomy. We represent hundreds of thousands of people tired of the status quo."

Many patients are put on birth control for long periods of time, even though it is palliative and associated with high recurrence, Berna noted. "Patients will have 10 ablation surgeries with their ob/gyn, but their regular ob/gyn isn't [trained to] take [tissue] off of the bowel and off of the bladder, so patients are getting multiple, partial, ineffective surgeries time and time again, which are associated with high pain recurrence," she said. "The definitive treatment ACOG promotes is hysterectomy, when by definition endometriosis is a disease outside the uterus ... Even after hysterectomy, [patients] are still in pain and still suffering."

"All we're asking is for ACOG to educate providers, and for it not to take so long to [diagnose patients] and refer them to a specialist who is equipped to handle this very challenging disease," she added.

One issue that both sides agree on is the need for better coding and reimbursement for endometriosis treatment. "For deep pelvic excision, a specific code has not been developed," said Lawrence. However, he added, ACOG doesn't develop reimbursement codes; they are developed and approved by the RBRVS Update Committee (RUC), which is run by the American Medical Association.

"We have been working with several other societies trying to assist in having a code developed, but we have to have the information -- peer-reviewed articles to base a [coding discussion] on," he said, adding that ACOG has worked on the issue along with the American College of Surgeons and the American Society for Reproductive Medicine.

For right now, though, "all endometriosis surgery is coded the same way, but [it] is far from the same," Guidone wrote in an email. The code being used is 58662, which is defined as "laparoscopic surgery with fulguration or excision of lesions of the ovary, pelvic viscera, or peritoneal surface, by any method."

"So a surgeon doing a 30-minute superficial laser burn from a few areas is billing for 58662, leaving disease behind in abundance," she said. "The endometriosis surgeon with a dedicated focus who can do laser excision -- or excision using any tool -- who is spending 5+ hours meticulously removing the disease from all areas including bowel, bladder, etc. is also billing for 58662, because the specialty is not recognized under the archaic coding system."

ACOG also is lobbying for more federal funds for research on treating endometriosis. "Despite the number of women suffering from endometriosis, there are too few treatment options available to patients," the college and eight other organizations wrote in a letter sent Thursday to House and Senate leaders. "The serious emotional, physical, and financial burdens associated with endometriosis affect not only the women living with the disorder, but their families and society as a whole."

"[National Institutes of Health] research dollars dedicated to endometriosis have dropped from $16 million in 2010 to $7 million in 2018," continued the letter. "There is a need for a comprehensive assessment of the current state of endometriosis and the identification of areas where more research and data can contribute to improved treatments and outcomes. We urge you to include report language in the [upcoming appropriations] bill that addresses this issue and ensures that this disease is given appropriate attention and prioritized as an important women's health issue."

Accessibility Statement

At MedPage Today, we are committed to ensuring that individuals with disabilities can access all of the content offered by MedPage Today through our website and other properties. If you are having trouble accessing www.medpagetoday.com, MedPageToday's mobile apps, please email legal@ziffdavis.com for assistance. Please put "ADA Inquiry" in the subject line of your email.